hello,
i am caregiver to my husband del, and i have a question; after tx.(chemo/ rad.35 tx. finished 2 months ago)he developed a headache that has not gone away, requiring more pain medication (fentanyl, oxycodone). i am concerned, has anyone encountered this?? also, he can sip water, but has been unable to swallow without pain since treatment. he is on tube feeds via peg. is this unusual? how long is too long before swallowing function is lost??
thank you all
BOT t3n3m0. chemo/rad 3 tx. finished sept. 30.

Nycgrl, the "headache" is something we had to deal with for quite a while during John's tx. It started during radiation and just wouldn't go away [he never had headaches prior to cancer]. When it got almost unbearable, his Doc put him on an amitryptiline[sp?] patch. He wore it for several days before the adverse reaction began and we had to take it off- BUT the headache was gone and did not come back. Something broke the cycle. Keep pushing the Doc for something else to try for the headache.[John was also on fentanyl, which he could not tolerate, and hydrocodone]Sometimes certain drugs will cause headaches. As to the swallowing issue- he certainly can lose that ability if he doesn't make himself work toward swallowing. It might help to gargle with Lidocaine or some other numbing solution before he tries to swallow. I'm glad he has the peg for nutrition. Learning to swallow again can be a big issue. Hang in there. Amy in the Ozarks

At one point someone thought rob may have a brain secondary because of his headache/jaw/earache,He actually had trigeminal neuralgia .Amitryptilline sorted it out, and also something as simple as soluble paracetomal.The doctor explained that you need different types of pain medication for different types of pain,and fentanyl wont neccessarily stop a headache which is strange really.Rob eneded up on four different pain meds all at the same time to target different issues.

thank you for the advice, i wasnt really sure the fentanyl was actually doing anything, he went up on the dose, but the baseline headache is there, i will definately bring this up to the docs. today..
keep us in your prayers today, we'll probably get the first pet/ct results post treatment at the doctors appt.

Loss of swallowing function is unfortunately very common post-treatment and is why many oncologists get on patients' cases to try and swallow *something* (even if only sips of water) all the way through. If your husband can manage to do this then he may not lose function completely, but it is sure to be compromised.

By now your husband should have been referred to a speech/swallowing therapist for a barium swallow evaluation to determine where his problems lie. Even if he had eaten food all the way through, like my husband did, there will be inevitable damage to the muscles, tendons and nerves which support the very complex swallowing reflex. INSIST that your husband get such a test, which involves a fluoroscopic analysis of his swallowing (or lack of it) when challenged with a thin liquid, thick liquid, puree and solid. They will also analyse any speech problems which may have developed.

The therapist will then design a series of exercises to strengthen the muscles of the tongue and pharynx, etc., which hopefully will (over time) help restore more-or-less normal function. My husband did these for months, and saw a lot of improvement.

The pain issue is more complex. The reaction to the fentanyl (vivid dreams, hallucinations) does occur and in some people, they find they cannot adjust. My husband had problems for about a week but not severe as some, who cannot take the drug.

The neuraligia issue is worth exploring, I myself had a severe facial neuralgia about 10 years ago from what we eventually discovered was a deep infection below a tooth, but everyone initially thought was something far more serious! It responded to a low dose of an anti-seizure drug which allowed the inflamed nerves to recover, and "broke the pattern" of pain.

Finally, some centers (eg. Hopkins) are using acupuncture for pain of cancer patients that will not respond to the usual drugs, so this could also be explored. Even if your hospital doesn't do it, there may be a center near you.

I should add that if your husband was a non-smoker, and had a BOT cancer, there is a high probability it was due to human papilloma virus which is a biologically different cancer with a better response to treatment and much reduced risk of recurrence. If your center did not test him for this (with a DNA PCR test) then you should explore having a samples ent to Johns Hopkins for analysis. Cancer treatment centers should ALL be testing for this now as it affects prognosis, follow-up and any comparison of efficacy of various treatment plans. There are also rumblings that preferred treatment as well should be different, although it is not at this time.

Gail